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9.29.2012

She's My Hero

Those of you that have been following me here in blogland for a while, know that my daughter suffers from something called Cyclic Vomiting Syndrome (CVS). C (age 8, turning 9 in November), has suffered from this mysterious illness since infancy. She was diagnosed at age 3 by a pediatric neurologist at Hasbro in Providence, Rhode Island. Never heard of it? You are not alone, although it is recorded in medical books back into the 1800's.

Cyclic Vomiting is just what its name suggests, vomiting in cycles. Every person's cycle is different. Many people have an episode after a trigger,( stress (good or bad) / or a food perhaps), has been present. Others, like C, are triggered by time. C is what is called a "Calendar Kid". Since early childhood, we have literally put an estimate on the calendar, and have pretty accurately determined when C's episode was coming. Luckily, as her age has progressed, she has gained a few days each year. When I started recording at age 3, her episodes were 50 some odd days apart, in early 2012, they were hovering around 80 days.

Then, a miracle happened....the summer came and went....no episode. One hundred days....one twenty, one thirty....then this past Sunday, on the 154th day, an episode hit. We knew it was coming that night. How? Every time an episode is coming, C's world spins upon waking. Horrible nausea and vertigo rock her little world. She is then fine for the rest of the day; however, we know it's coming that night.

C always wants to stay up late the night an episode is coming. She knows that somehow, once her little body has fallen into a deep slumber, SOMETHING is triggered within her brain or stomach (this is the mystery), and the episode begins. Sometimes it's midnight. Sometimes 1:00 am. This time, she fell asleep at 9:00pm, and woke up vomiting at 9:45pm. I grabbed the bowl from my spot in her trundle, and prepared for a night filled with wretching, gagging, at times sobbing, speaking in tongues(that's what I call her comatose like confusion). Here is where we experience another cycle. Another oddity. Her starting cycle follows til morning. This time, it was 20-30 minute intervals. Yes, this 40 some-odd pound 8 yr old vomited violently every 20-30 minutes for 8 hours. We have learned not to try to stop it mid-way by letting her sit up and watch TV, because it will come back the next night to finish what it started.

This was by far her worst episode. What she bought in time, was stolen by this wicked illness. I knew that if it had returned the 2nd night, C would end up in the hospital from dehydration, and exhaustion. Luckily, it spared her the 2nd night, and as I kept vigil in her trundle again, praying she would remain in her peaceful slumber, my prayers were answered.

We both stayed home Monday, laying low, trying to recover. C suffered vertigo for a day or two, and then it was gone, C's life back to normal, her cheeks rosy again, her bubbly personality returned.

You'd think our little girl would be bitter, angry with her illness; however, she is not. She had a hip brace shortly after birth, wore a helmet, had torticollis, was diagnosed with CVS in 2007, and then with Celiac Disease in 2011. Yet she is kind and giving. She lives life to the fullest EVERY day, breathing in what life has to offer, and spreading it to others. She, more than anyone else in this world, is my ultimate teacher. She teaches us all to overcome, to rejoice, to live. She's my hero.

Poor baby...my heart aches for her. When I'm sick that how bad it is for me. I usually pass out...etc... It's awful. My husband suffers from vertigo episodes...completely debilitating. Grrr...so sorry you have to go through this. As a mom that's torture. Praying for your girlie...

What a brave and beautiful girl! She has been through so much, and I can just imagine how your heart aches for her. How wonderful though that she takes it all stride, and is such a giving and loving little lady. I know you must be extremely proud! Thank you for sharing the update with us! :)

I stopped by to thank you for the very nice comment you left for me. I'm so sorry to learn of your sweet daughter's illness. Her episodes sound like a nightmare for both of you. What a relief when it's all over. Bless you both. It seems that both of you are able to appreciate life to its fullest!

your daughter is a teacher of the world... we all have our own struggles but that doesn't mean life is horrible... she's proof of that... she is a beacon in the darkness for all of us to follow... thank you for sharing your story with me and the rest of us... she is also my hero and i am grateful that she has come into my life... god bless...

Oh my gosh, I cannot imagine going through that! It must be so frustrating and scary to watch this tiny being get so sick! I hope she has another VERY long stretch with out it creeping up on her again.

I'm sure you hear comments all the time from "well meaning people" (LOL), but have you tried Antivert for the vertigo? It is a prescription medicine that's not expensive. I had a relative who got vertigo so bad, she would be in the hospital. But Antivert helped tremendously.

Thanks E. We haven't tried Antivert. I wonder if you can take it just for a day? We have avoided other trial meds due to the fact that they hadn't been used in kids, and C would have to take every day for a 4-5 times a year kind of thing. I will look into this, and always welcome advice. Your kind words are appreciated.

Your daughter is very beautiful and healthy looking....I would have never guessed. I admire her strength and spirit very much. To be 8 and to have gone through so much....I can't even imagine. Thank you for sharing and educating all of us on CVS. And I hope there will be no more episodes for C. Loi

She sounds like a truly amazing child. As an adult I have suffered migraines - 8 eights of vomiting at a time - I get them a couple of times a year and I would not wish that on any child. I am so sorry that your little girl goes through that - it's seems so unfair to put an innocent child through that. I am so pleased to hear for the rest of the time she smiles, laughs and plays and can forget about it. I hope they find a cure or she grows out of it!♥Melissah

I am so sorry to hear this. I just came over because I saw the name of your blog on Loi's blog, and I am doing a Nantucket series. I am feeling hopeful for your beautiful girl. Luckily she is so young and time is on her side with medical developments. Her spirit is beautiful and somehow there will be a bright side to all of this. She is my little hero for smiling all the other days.

When I read what you shared, I thought of my mom's vertigo episodes and how debilitating they are. She tried different medications, ear checks, etc... The antivert comment reminded that my mom tried it, but the thing that really truly worked was chiropractic care. Our chiro is a neuro-chiro. More education than a regular chiro. The adjustments he did to help her specifically for vertigo really, really helped my mom. And I swear I've read about children getting chiro adjustments to help w/vomiting. Not the same type your daughter has, but wrenching nonetheless. Maybe something to look info if you haven't already?

Oh you amazing Mother!!! How you have the strength to be who YOU are is the amazing thing. She is so blessed to have you and she is such a sweet soul. I am glad the episodes are further apart but when they hit OH BOY. I feel for you. Thank you for sharing your story and helping others!!! xo

What a strange and terrible illness. I'm so glad the time intervals are getting longer and that you have found some tactics for dealing with it. Fingers crossed for a meaningful breakthrough very soon.

I am so sorry to hear about your little peanut....My daughter may possibly have CVS as well. She is 21 and has had 4 episodes in 7 mths. In the past we just figured it was the really bad flu. I can't imagine it happening at such a young age. Good luck and thank you so much for sharing!!!! The Best of Luck to C..... will keep her and your family in my prayers!!!!

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Please donate to CVSA help us find a cure.

Those of you have who have been reading my blog for a while know that my precious 11 year old daughter suffers from this migraine related (they think) disorder. Every 70 some-odd days she has an episode of vertigo and vomiting.Please visit the CVSA site to read about this misunderstood / misdiagnosed disorder, and ask a friend to do the same.

E-Mail me at maggie_3@comcast.net with any questions! Thanks for your support!www.cvsaonline.org

Do you suffer, or know someone who does? Pleas email me so we can chat!